Saturday, January 16, 2010

Where do I start?

My mind is all over the place right now. Between the health of my children, David being out of town all week and the nightmare in Haiti...I don't know what to think or where to let my mind focus. For two days, I didn't watch a single thing about Haiti because I couldn't bear to even think about it. I did the same thing with 9/11. I still haven't read or watched a single victim's story about 9/11. I can't let myself go to that terrible place. Last night I did watch and read a lot about Haiti and my heart is breaking for these people. But once the true individual stories of despair start being aired, I'm out. It's the personal stories that destroy me. I imagine that's how most people react too.

Now for our health. I believe I started this blog last January when Bryce had an ear infection. We seem to have come full circle. I know what to look for better now. Once Bryce gets a cold, it frustrates me to no end, that it always turns into a secondary infection. Not one time has he fought off a cold. It starts with a runny nose and then I wonder how long I'm going to have to wait until it turns into an ear infection. Usually it takes 10 to 14 days. But, this time, Bryce got croup. So, on day 6 we went to the doctor. She gave him a steroid to fight off the croup, but no ear infection yet. 4 days later we were back at the doctor because Bryce had spiked a fever and this time he has a double ear infection and sinus infection. So, now we get 10 days of antibiotics.
All of this really wouldn't be that bad except Braydon is sick too. Tough little guy, for the first time in his life, he powered through this one. The whole time he kept saying how he wasn't sick and he was fine. But, really he was sick with a runny nose and cough. After 15 days of this, he got worse and his eye was goopy and he started the fever. I took him in the day before I took Bryce and he has a sinus infection.
All of this is very boring, but this is where my mind is.
Also last week, we started testing Bryce to see why his reflux won't go away. We did a blood test to test for Celiac Disease (gluten intolerance). We did an upper GI test to see if there is an abnormality in his esophagus, stomach, or duodenem. Next week, we go back to see the GI doctor for results.
Blah, blah, bah...
Did I mention that through all this David was out of town. Oh yes, I did mention this.

I actually think I'm handling it all pretty well, except I feel like I'm in survival mode all the time. Get through this test or this appointment to get to the next one. There isn't much carefree fun going on in my life right now. There have been glimpses like at book club this week when one of my friends told the story of her son on Christmas reading the tag of a gift from his uncle Curt. He innocently said this one is from "Uncle Cunt". It was hysterical. We couldn't stop laughing. I needed that.
With the kids, we have discovered the Wii. Bowling with the Wii has provided lots of carefree fun. So has the joys of the classic stories, The Three Little Pigs and Winnie the Pooh. It's fun to rediscover these great books with my kids.

But, I am stressed. I need to relax. But, when your family is sick, it is so very hard. I can hear Bryce coughing in his crib as I type this.

To the people of Haiti, I am praying for you. I mourn for you and I wish for you peace and comfort now.

Friday, November 20, 2009

We'll Paint the Octopus Red

Bryce is almost 19 months old now. When Bryce was about two weeks old, my sister gave me a copy of the childen's book, We'll Paint the Octopus Red by Stephanie Stuve-Bodeen. It's a picture book about a little five year old girl whose going to have a baby brother or sister soon. She's so excited about having a sibling. Before the baby is born she talks with her dad about all the fun things she's going to do with the baby. But, then the baby is born and he has Down syndrome. The little girl is worried that since he has Down syndrome he won't be able to do all the fun things she had hoped. The dad explains that yes, he'll be able to do all the fun things, he just might need a little help or it might take him longer to do certain things. The big sister is reassured. Then, at the end of the book, there are questions and answers about Down syndrome that you can share with your child.

I've had this book under my bed for almost 19 months waiting to read to Payton and Braydon. For the longest time, David and I weren't really ready or didn't know how to tell Payton and Braydon that Bryce has Down syndrome. For awhile, we didn't say anything. But, of course, we always talk about Down syndrome so the kids heard those words. As a family we attend a monthly community group of families of children who have Down syndrome. So the kids have been around it, but we never really came right out and told them.

One day a few months ago, David took Payton and Braydon out to lunch and Payton asked about Down syndrome. David told them that Bryce does have Down syndrome and explained that he might learn how to do things a little slower than other babies. I was a little upset that I wasn't there for the conversation, but I got over it.

As the weeks go by, Payton is starting to ask more and more about Down syndrome. Today she asked, "are we going to have to help Bryce all the time because he has Down syndrome?" I thought to myself, this is it, the question I've been waiting for. I answered that we might need to help him with some things, but not everything. Bryce we'll learn to do things for himself with time. Then, I ran upstairs and grabbed We'll Paint the Octopus Red. I sat down with the three kids and we read the book together. Braydon kept getting up and running around. I'm not sure if he really didn't want to hear the book because of the subject or if he was just being his usual hyper self, running and jumping all over the place. Payton really listened to the book. I think she's actually starting to understand what Down syndrome is. One part of the book mentions how people who have Down syndrome may look different. Payton indignantly said, "Bryce doesn't look different." So, she's already starting to stick up for her baby brother.

I think Braydon is still too young to understand exactly what it all means. In his innocence, Braydon will probably be the best friend and teacher that Bryce will have. To Braydon, Bryce is his playmate just like Payton. There is nothing different about him. Payton will of course be Bryce's best friend and teacher too, but I think it will be a little bit different. She can already tell that there is something different about Bryce. With that knowledge comes a bit of reserve that Braydon doesn't have. This is not a bad thing, but I do think it is interesting.

Either way, they both love their brother so much. No matter what, they will all be able to, "paint the octopus red" together.

Thursday, August 13, 2009

Changes

It seems like just about every six months my life as a mother changes dramatically. The first huge change is when you bring your baby home from the hospital for the first time. If that doesn't dramatically affect someone's life, I don't know what will. Once you get all the initial baby stuff figured out, you coast for awhile between feedings, naps, and diaper changes. But, then the little baby starts to crawl. Now, you really have to baby proof your house. Even if you ignored what all the baby books said up until now, you really can't put this off any longer. If you have stairs, the gates must go in, the outlets must be covered, and the cabinets must be locked. Once that is taken care of, now the little darling starts to walk or run as my kids mostly do. If you haven't lost all of the baby weight yet, this is the stage when the pounds start to really come off. Forget breastfeeding, let's talk about chasing an 18 month old all around all day long. Once you are past the initial shock of chasing a very young toddler around, things do calm down a bit for awhile. But, just you wait until that sweet little angel turns into a two year old. Now, we have the tantrum stage. Nothing is right or good, sometimes, I have even told my children they are not fit for society and we must stay home because of their bad behavior. But, we're making it through.

The birth of each additional child obviously completely changes your life again. I once heard a quote from a friend of mine, "only children are wasted on people, who have only one child." -Richard Buckingham. It's kind of bizarre, but really makes sense if you think about it.

I can't write this post without mentioning the change of having a child who has Down syndrome does to your life. I don't really want to get into it too much right now, but in short, the appointments have multiplied exponentially. Therapists, doctors, specialists, early intervention counselors, meetings, research, this is how my life has changed.

But, where I was headed when I started this post is to the change I have found myself in this week. SCHOOL. I will now live in my car for the next nine months until summer vacation begins again. Payton started kindergarten yesterday. It was a rough start, but I think she's going to make it. It's very strange to me to take her to school every day of the week now. The most she has ever gone to school is two days a week. Now, suddenly it's five days a week.

So, I have entered a new era. The drop off/pick up, chauffeur mom. This stage will last a lot longer than the brief stage between crawling and walking. I don't think it will really change until Bryce is in first grade. Then all three of my kids will be in school all day long. That will be a huge change (in about 6 years). What will I do then? Maybe I'll get a job. Probably not. Until then, I'll be in the car. How much is gas right now?

Sunday, July 12, 2009

Dinner with Governor Bill Ritter

Last Tuesday, July 7, David and I had the great fortune to go to downtown Denver, in Larimer Square, to have dinner at Bistro Vendome. We were invited to attend because we had come in second place for fundraising for the Elephant Rock bike race for Bryce's new school, the Rise School of Denver. The top 10 fundraisers were invited along with the corporate sponsors. We arrived at 6:30PM for cocktails. David and I only knew one other couple there, so we had to start meeting new people right away. I took the opportunity to talk to the only child there, named Jack. Thank God for Jack because he was born with Down syndrome to some amazing parents, Mary and Greg Holm. His parents actually started the Rise School in Denver. Jack is 9 years old and about the cutest thing I have ever seen. He told me all about the basketball camp he had attended that day, complete with elaborate details of a game called "dead worm". I loved talking to him, because he is so happy, healthy, and talks so well. He seems just like any other little boy.
After I talked to Jack for awhile, it was time to sit down to dinner. The restaurant had set up a long table that seated about 45 guests. David and I sat in the middle. All the guests crowded in and took their seats. I was disappointed that no one sat across from me, but I was so excited to be able to eat at a French restaurant. It had been so long and the food was fabulous. Just after everyone had ordered their dinners, in walks Governor Bill Ritter. I was surprised to see him there, but not completely because he had participated in the Elephant Rock race for Team Rise like David had. Governor Ritter is friends with Jack's dad, Greg Holm. He sat down in the only empty chair which was directly across from me. I was nervous at first. I just reached out my hand and introduced myself right away. Actually, it was very easy to talk with him. It was like having dinner with any other person, only he is the Governor of Colorado. Eventually I got up the nerve to ask him about charter schools for children with special needs. I had already told him that Bryce has Down syndrome. I mentioned that my daughter would be attending Academy Charter school in Castle Rock. When I asked the school if Bryce would eventually be able to attend Academy Charter School, I was informed that they do not have the money or resources to accommodate a child with such "significant needs as a child with Down syndrome". The Governor actually finished my sentence before I could get it out. He said, "they told you he couldn't go there." I was shocked. He said it was true that the way the funding works, they don't have the money for it.
So, there it is. Straight from the Governor's mouth. I told him I didn't like that, and that it should be changed. He didn't say much to that. He wasn't rude, he was just telling me how it is. I suppose I don't have to accept this. If I really do want Bryce to attend the charter school, I could make it my mission to see that it happens. I'm already on the PTO for next year. My theory is that if I really get involved in the school, it will be harder for them to turn him away. There was actually an article in the Denver Post not too long ago about the lack of students with special needs who attend charter schools. Here's a link to the article:
http://www.denverpost.com/search/ci_12581441
Despite the disappointing answer to my question about the charter school, I did really enjoy having dinner with Governor Bill Ritter. My dad joked if the Governor had called me yet to be in his cabinet. Governor Ritter is a Democrat. I didn't vote for him for Governor, but I do like him. I love that he supports the Rise School. A third Republican just announced yesterday that he is starting his campaign for Governor of Colorado in 2010. But, I think I already know who I'll be voting for.

Bryce's Surgery


On July 9, Bryce had to go to Children's Hospital in Denver to have his adenoids taken out and tubes put in. I have been to the Children's Hospital about 4 or 5 times for Bryce to see Pat Winders for physical therapy. The place doesn't even look like a hospital. It has only been open for a few years. Inside everything is bright colors, soft carpets, fun couches, and toys everywhere. When we go to physical therapy on the fourth floor it is more of the same. Friendly faces, more fun furniture, play areas, and picture books. The room where we do physical therapy is basically a playroom.
Last Thursday, we had to go to the second floor for Bryce to have his surgery. In the waiting room, there is an amazing fish tank, chairs with duck feet and more toys. But, then when they called us back and opened the big doors, I found out what was hiding back there. It was an actual hospital. I find it very amusing how surprised I was to walk into an area that looked like a hospital. I don't know what I was expecting, the doctors to operate with toy doctor kits like my kids play with, but this was the real deal. No more soft carpets and duck feet.
The nurses were incredibly nice. They all fawned over how cute Bryce is. I was really nervous. I know that adenoids and tubes aren't a major surgery, but it's still a surgery. I even had this exact surgery when I was a little girl. It scared me that he would have to be put completely under. David and I went back to the operating room while they put him under. It took longer than I thought it would for him to fall asleep. But, time was moving at a strange pace that day. After Bryce went to sleep, David and I went out to the waiting room. The surgery itself only took about 30 minutes. I couldn't do anything during the surgery except sit there and wait and go to the bathroom 3 times. Too much coffee or just nervous behavior, I'm not sure. David couldn't believe it.
After the surgery, we went back as soon as he woke up. The nurse couldn't believe how well he was doing. She said she had never seen a baby his age, Down syndrome or not, do so well after this surgery. He did do great, but there was one problem. The anesthesia wired him. I thought he would be groggy and tired, but he didn't take a nap the entire day. His surgery was at 8:45 in the morning. Our doctor told us to be ready to spend the night at the hospital, but there was a chance we could go home that day. We were able to leave by about 12:30 that afternoon. Bryce did fall asleep in the car on the way home, but that was all he slept the entire day. He just cried and wanted to be held and was pretty miserable all day long. All I could give him was Tylenol. I don't know if it helped that much. Bryce finally went to sleep around 6:45 that night. Then one hour later, he woke up. I thought oh no, he's going to be up all night. Luckily he was due for more Tylenol at that time and he went right back to sleep.
It has been 3 days since his surgery, Bryce has had his ups and downs. He's had a fever and been pretty yucky since his surgery. But, I'm glad he's sleeping better now and napping.
The reason for the surgery in the first place was that Bryce seems to have chronic fluid in his ears. He has not done well on his hearing tests lately either. His nose is congested most of the time. The surgery should help with his hearing, speaking eventually, and balance. For those reasons, he really needed the surgery and I'm glad he got it. I was so nervous. I'm so glad it's over.

Monday, June 29, 2009

Bryce's Collage


We had a professional photographer take our family pictures about 6 weeks ago.  We started doing this when Payton turned one.  We did our first family photo shoot just after her first birthday.  Then we had our second photo shoot when Braydon turned one.  Of course we didn't want to leave Bryce out.  It was hard to get the pictures taken.  First, we had to coordinate with school schedules, work schedules, and photographer schedules.  Then, once the day arrived, Bryce had pink eye.  He didn't kind of have pink eye, he really had it.  I tried 3 different treatments to get rid of this thing.  Finally the doctor put him on oral antibiotics and that did the trick.  It was nasty.  I'm so glad we are done with that.   Of course, we rescheduled.  Just before Bryce turned 13 months, we got his "12 month" picture taken.  It was also really hard to decide what to wear.  Our photographer, Lisa Turner, runs her business differently than most.  She burns all the pictures she took of us onto a CD.  We purchase the CD from her and then we can do whatever we want with the pictures.  Once I have the CD, I'll post more pictures on my blog.  For now, this is the collage she created for us to hang in Bryce's room.  He's so cute!!!

Friday, June 19, 2009

Pool Day




I finally did it.  I took all three kids to the neighborhood pool, by myself today.  I was nervous about going by myself because not one of my three children can swim.  Payton and Braydon are in swim lessons, but they cannot swim yet.  I do think swimming is starting to click with Payton.  I predict, she'll be swimming by the end of the summer.  
Bryce was so sweet.  I set him up in the stroller next to the pool.  He happily watched me trying to teach Payton and Braydon how to swim for about 20 minutes.  Then after we all ate lunch, we went to the baby pool so Bryce could play.  He had a blast!  He just crawled all over the place.  The best part of the pool for babies is that there is a zero degree entry.  Bryce crawled over to the fountains and played with Braydon's football.  He thought it was great.  He played for an hour solid in the pool without making a sound of complaint.  His little knees were red for the rest of the day after all that crawling around.  
On the way to the pool I told the kids my new mantra:
"No fighting, no crying.  No fussing, no whining."  They agreed to my conditions.  The best part is they actually followed through and behaved.  With them, if I set the expectations up ahead of time, things usually go much more smoothly.  The trick is to remember to set up the proper expectations in advance.  
I feel like summer has finally started.  It has been cool and rainy most of June.  I'm ready for the sun, the pool, backyard  barbecues, and leisurely days.